Presidential Candidates Sending Representatives to NFDI2012

As of yesterday, both Barack Obama and Mitt Romney confirmed that they will be sending representatives to NFDI2012 to present their respective campaign’s position on Americans with disabilities. Edward M. “Ted” Kennedy, Jr. will represent Barack Obama, and Rep. Cathy McMorris Rodgers will represent Mitt Romney. Senate candidate Sharrod Brown (Ohio) will also send Rep. Nancy Garland as his representative. Republican Senate nominee Josh Mandel (Ohio) has not confirmed whether he will attend or send anyone in his place.

All seats are filled for the event, being held at the Hyatt Regency in Columbus, Ohio on September 28. You can still “attend” NFDI2012 via webcast, however. Visit the website to sign up.

If you have concerns about disability issues, you need to hear what the candidates have to say in order to make an informed decision when you vote. Listening to these representatives is likely the closest you’re going to get, given the fact that disability issues were given only a passing nod in Clinton’s speech at the Democratic National Convention, and not mentioned at all during the Republican National Convention. Please take advantage of this opportunity.

And, after I comment on Obama’s DNC speech, I take a break from politics for a while. Promise.

Oh, Obama…

So, having missed Obama’s DNC speech when it originally aired, I took some time out of my Sunday to listen to it.

I have to admit that this point I’m kind of tuning out on the economics when people give these speeches. It seems like both sides can manipulate the numbers on job creation and the economy to either make Obama look terrible or to defend what he’s done. And I realize that there are a whole lot of people that think that this election should be about nothing but the economy, but if I was a voting American, I wouldn’t be one of them. So there’s my bias going into this (like anyone who reads regularly doesn’t know that I’m biased towards the Democrats, but it’s good to get these things out there.)

Now, all that being said…if I was an undecided voter – say, the Canadian just starting to learn about American politics that I was four years ago – I think I would have found Obama’s speech a little confusing. I was a little confused by it myself after following American politics and Obama’s message for four years. I felt like I had to fight too hard to put the pieces together.

Clinton Nailed It

When Clinton put it in front of me, I got it: “If you want a winner-take- all, you’re-on-your-own society, you should support the Republican ticket. But if you want a country of shared opportunities and shared responsibility, a we’re-all-in-this-together society, you should vote for Barack Obama and Joe Biden.” Maybe it’s because I’m Canadian (and therefore socialist, I’m told), but that got my heart a-thumpin’.

And I eventually got that message listening to Obama’s DNC speech as well. But I had a couple of “Where’s he going with this?” moments before he got there, when he was talking about:

How America was all about “the promise that hard work will pay off; that responsibility will be rewarded; that everyone gets a fair shot, and everyone does their fair share, and everyone plays by the same rules”

How Americans “insist on personal responsibility, and we celebrate individual initiative. We’re not entitled to success. We have to earn it. We honor the strivers, the dreamers, the risk- takers, the entrepreneurs who have always been the driving force behind our free enterprise system, the greatest engine of growth and prosperity the world has ever known.”

I went and found these passages in particular in a transcript of Obama’s DNC speech, because they really threw me off. I understand that he’s talking about the American Dream. I thought that Obama understood, however, that there’s a large segment of the American population (and the bulk of people with disabilities fall into this category) that get a much more limited shot at at the American Dream because of the place they occupy in society and the resources available to them because of the place that they occupy on society. And I’m not just talking about monetary resources. I’m talking about having advocacy skills to help get your kid with disabilities into a good school, for example, or the confidence in herself that a woman needs to get herself out a domestic abuse situation. There are all kinds of “capital” in this society.

Obama’s DNC Speech: Bottom Line

Like I said…Obama’s DNC speech eventually struck a chord in my idealistic heart. He deserves kudos for addressing education, the student loans programs and for renewing his commitment to health care reform and to strengthening Social Security. I think his appeal to being good citizens was his way of trying to tie it all to Party values neatly and concretely, as Clinton did…but I really did feel like I had to work a whole lot harder to get there.

And there was no mention in Obama’s DNC speech of people with disabilities. I won’t hold this against him. You can’t mention everyone in one speech.

If you’re looking for something to do this weekend and maybe looking for a worthy cause that needs your time and energy, consider taking a walk down to your local Goodwill location on Saturday at around 10:30 am. Perhaps it will be one of the 80 at which the National Federation of the Blind (NFB), the Autism Self-Advocacy Network (ASAN), and the disability advocacy group ADAPT have organized one of their informational protests regarding Goodwill’s compensation policy for people with disabilities.

People With Disabilities Working for as Low as $0.22/Hour at Some Goodwill Locations

Regular readers may remember that earlier in the summer I wrote a post about this when it first became public knowledge. I thought the lowest that people were being paid was $1.44 an hour. As you can see, apparently it’s been much lower in some places (http://www.disabilityscoop.com/2012/08/21/protests-target-goodwill/16285/). The NFB and other American disability organizations called for a boycott of Goodwill in America until they stopped the (sadly, legal) practice of giving locations discretion to pay workers with disabilities substantially below minimum wage. 64 of the 165 Goodwill-affiliated agencies in the US engage in this practice.

Goodwill argues that the certificate that allows them to pay people with disabilities below minimum wage is a “tool” that facilitates job creation for people that would otherwise find it very difficult to find work.

I don’t know what’s scariest about that “justification”: that Goodwill actually believes that paying anyone $0.22 an hour to do anything is a “job”, that they have the guts to put themselves out there as believing they do…or that there are people in this country, with or without disabilities, that need employment that badly or put so little value on the work that they they can do that they’d actually do work for that little money. It’s a whole lot of wrong, on a whole lot of levels.

Breaking It Down a Little Further

It’s difficult to understand how Goodwill doesn’t see how this creates more issues than it solves.

It’s exploitative. No two ways about it.

It does nothing to assist people with disabilities who are living in poverty to better their financial situation.

It sets a poor example for the rest of the business community: “Goodwill does it, and we all know that they do good work for everyone, so it must be okay.”

It sets a poor example for the community, the country, and the world. Do we really need any more examples of people with disabilities being devalued?

The Goodwill Protests

As I said, the informational protests are happening at Goodwill locations across the country this Saturday, August 25, 11 am – 1 pm local time. You can keep tabs on what’s happening by following @NFB_Voice on Twitter. Also check out this article for anything you’d ever want to know about the protests (including how to organize one in your area if one isn’t going on, complete with promotional materials) and the Goodwill controversy: https://www.nfb.org/fair-wages#Protest

I have a friend who actually does a lot of work in the emergency preparedness area, and who has been a part of the teams assisting people with disabilities in emergencies infinitely more serious than the one I encountered last night. But a night in the dark in my apartment building was definitely enough to make me think about emergency preparedness and about how much more vulnerable people with disabilities and chronic health conditions are in emergency situations…including myself, because my emergency preparedness plan simply isn’t good enough.

Emergencies in My Apartment Building

Due to the demographics in my area and the nature of my apartment building, most of the residents are seniors. Some are in very good health and, like me, require very little support to live in the building. Some aren’t in such good health, and rely on a lot of medical home supports and other community supports and/or support from family and friends to remain living independently. The management helps as much as they can by making sure that people sure that have lots of notice for events like maintenance work in the building and community (including planned power outages that are going to last for several hours) to make plans.

Of course, not every power outage is planned. But the unplanned ones rarely last long. Our hydro crews, for all our complaining, are very good at getting things back on track quickly. However, whatever knocked out our power last night did an especially good job – it was out from 8 pm last night to 4:30 am this morning.

Emergency Preparedness – I Need a Better Plan

My normal emergency preparedness plan for a situation like last night’s is to read until it gets too dark and then go to sleep until the power comes back on. But this time I was acutely aware of a few things:

I’d been on the phone long-distance with a friend who was possibly going to be worried that I’d suddenly disappeared. I don’t have a cel phone. I couldn’t email her, because my modem was, of course, not working. I couldn’t even call her if I could track down a phone that worked, because her number was trapped in *my* phone, and I wasn’t sure I had it written down anywhere else.

Going to my father’s was out of the question – how was I going to call him? I’ve only been without a cel phone for about a year, and feeling as cut off as I did last night was absolutely unnerving.

I couldn’t find my flashlight and it was getting dark.

I ventured out into the lounge after a bit to see if anyone was around who’d heard anything about when the power was coming back on. I was able to use someone’s cel phone to leave my father a message with my friend’s email address, asking him to email her and let her know that I was okay. And I realized that other people were having emergency preparedness issues too.

Emergency Preparedness – When Things are Unplanned

A woman sitting in the lounge had come down earlier in the elevator to visit with friends. She was now stuck in the lounge until her daughter could get over there (and she wasn’t sure when that was going to be) to help her get herself and her oxygen tank back up the dark stairs.

As I talked to her, I found myself starting to wonder about other people in the building with health problems, and what their emergency preparedness plans were. We knew by now that it would be a while before the crews could get the power on. What if it stretched into tomorrow? I knew that the management would bring by bottled water for drinking, but people would need to start flushing toilets…the nurses would need water for medical treatments…without the elevator in service, some people wouldn’t be able to get out of the building…as I continued to think, I got more and more anxious about the prospect of prolonged power shortage.

In my own apartment a bit later, there was still enough light that I easily changed my clothes and went to bed. But when the cats got me up later in the night for food (I don’t know how much later because my digital clocks weren’t working and my IPod wasn’t charged), I had the treat of trying to navigate my apartment with no light at all. Not safe. Not smart of me, to misplace my flashlight.

Important Things to Consider

How would I have handled all this a few years ago, when I was considerably less mobile? I don’t know that I even have a first aid kit if I fell now and hurt myself…

How would I have handled this if I’d had an intellectual disability and my support person wasn’t coming in until morning?

If you’re supporting people in these situations, you need to consider if you/your agency has an adequate, understandable (for you/staff and for the person) plan in place for each individual. Don’t wait until it happens and try to cobble something together then.

I’ve commented before on the fight that Joe and Chrissy Rivera have waged with the Children’s Hospital of Philadelphia (CHOP) to get their three-year-old daughter, Amelia Rivera, a kidney transplant. In January, Chrissy blogged that syndrome that a CHOP doctor had indicated to the family that Amelia’s Wolf-Hirschhorn diagnosis created concerns quality of life concerns, given that she’s “mentally retarded”, that made her ineligible for transplant. The Riveras did not want her placed on the donor transplant list, as Chrissy was willing to donate a kidney. They were asking for the hospital to do the surgery.

Wolf-Hirschhorn syndrome is a chromosomal condition, It causes physical and intellectual disability, as well as a variety of severe health problems.

The hospital denied the allegations that they discriminate on the basis of intellectual disability, as Amelia Rivera’s case implied. However, once the story hit the national news, people quickly decided that something had to be done. An online petition demanding that the hospital do Amelia Rivera’s transplant surgery got over 50,000 signatures.

I don’t know about the rest of you, but I find the idea of a medical system where people are deemed eligible or ineligible for transplant surgeries based on the medical professional’s assessment of potential quality of life profoundly disturbing. I’ve already heard too many stories about doctors (and other professionals who use the medical model of disability) who would rob people with intellectual disabilities of fundamental rights (and this has, at times, included the right to life) because of quality of life/”contribution to society” issues.

It’s a way of viewing people that not only makes major assumptions about the person’s capacity to have a fulfilling life (assumptions that are inappropriate in the extreme for a three-year-old who almost two decades of development ahead of her), but of the capacity of the people around her to assist her to develop a life that she finds meaningful. I’ve worked almost exclusively with young adults and adults with intellectual disabilities in my career, and been thrilled with how far some of them come with setting and meeting life goals in a very short time with good support from formal and informal networks. To say that “This three-year-old isn’t going to have a good quality of life because she’s mentally retarded” and then deny a treatment on the basis of that is criminal to me.

Yes, good for CHOP for coming around and seeing that they should be doing this transplant surgery for Amelia Rivera. However, it saddens me that they had to come around at all. For anyone who doesn’t think that people with disabilities don’t face hurdles in society, ask yourself if any doctor, ever, would have said about a three-year-old without a disability, “Well, I don’t think that this child will have a good quality life, therefore I think she’s ineligible for transplant.”

Three years old.

I submit that it wouldn’t happen. What do you think?

Thank you to everyone who signed the petition and fought for Amelia Rivera.

It’s time to check whether I actually am on Ontario’s “no call” list that’s theoretically supposed to keep most telemarketing firms from calling me. I’ve also started wondering about whether some other people that need to be on that list actually are.

My Stance on Telemarketing

I can see on my phone who’s calling, and I don’t answer calls that look like they’re from telemarketers. I figure that if it’s a call legitimately directed to me, they can leave a message. But sometimes I slip and grabbed the phone without looking at the number, or I answer because I get tired of seeing the same number over and over and over again. I hang up on automated pitches right away. If I get a live person, I listen to the initial pitch. Then I politely tell them “No thank you” (unless it’s a charity to which I’d like to donate), and I hang up.

Unless they’ve been really aggressive, or are calling me about something about which I’ve already gotten multiple phone calls, I try not to be rude. This is only a person trying to make a living. I always knew I’d be terrible at telemarketing, so I’ve never applied for those jobs, but there have been times when I’ve needed a job badly enough to consider it. I’ve got nothing against people reading a script and getting paid for it.

My Stance on the Current Climate of Telemarketing

I *do* have something against how aggressive those scripts have gotten. Even many charities hire telemarketing firms to solicit donations because they are, of course, very effective. When I get a call from a telemarketing firm on behalf of a charitable agency, frequently I can identify what sales technique is being used on me and sometimes I still end up giving a small amount of money that I didn’t intend to at the beginning of the call.

If I can cave to that kind of pressure, others easily can as well. When I’m short on money and I really can’t afford to give, I don’t. But not everyone can recognize that a telemarketer isn’t going to ask, “And can you afford this?” before suggesting an amount that they’d “love to see you give”. Too many of the people I’ve supported in the past assume that all people are looking out for their best interest. And, bless them, they’re easily confused. They’re targets.

Small Blessings

Mind you, I don’t imagine that many of them have the access that I do to a credit card, that the money will “disappear” before they hang up the phone, and they may change their mind about a cheque by donation by the time the mailing materials arrive. I know that I often talked with people about how they shouldn’t give money to anyone just because they asked for it. I suggested that they talk any request like that over with someone they trusted before making a decision.

And it’s not my business anyway if someone I supported want to respond to a telemarketing call by donating money, except for my concerns that current telemarketing techniques make it very difficult for anyone to say “no” to donating…and anyone on the Ontario Disability Income Support Program by definition has an extremely limited income.

What to Do About Aggressive Telemarketing

I don’t know what the solution is. When I first noticed charities starting to get really aggressive with their telemarketing, I actually spoke with an employee at an agency about my concerns that people who didn’t understand to what they were agreeing or didn’t have the confidence to stand their ground with a “No” or a hang-up were particularly vulnerable. It was from this discussion that I learned that telemarketing firms are doing more and more work for charities.

If you’re supporting someone with an intellectual disability that you believe may be vulnerable to this sort of aggressive marketing (seniors, for a variety of reasons, may also be vulnerable), investigate whether there’s a “no call” list in your area and what it covers. Other suggestions to deal with telemarketing:

Encourage them to get a phone that shows the number of who’s calling and to adopt a rule of “I don’t answer calls from numbers that I don’t recognize.”

Encourage them to get an answering machine to pick up any legitimate calls that they don’t pick up.

Encourage them to say “No” to any requests for money that they get over the phone. Explain that if they’d like to donate money to a cause or purchase something, there are other ways to do it; they haven’t lost their chance.

Include in the “Saying No” discussion that if someone won’t stop asking for money when they say “No”, they should hang up immediately.

Credit Where It’s Due

All that being said…

Once, after explaining to what seemed like the umpteenth telemarketing employee that week that I didn’t have a job and couldn’t afford to give that year (and getting ready to repeat the speech before he suggested that I just reduce the amount that I generally give), I got this response:

“Sorry to hear that, ma’am. We’ll catch you next time around. Good luck.”

I couldn’t get to the blog yesterday to write about this when the official celebrations were going on. However, I also didn’t feel that I could let it go by unnoted here that yesterday that Americans with Disabilities Act turned 22. And I’m a little hard on the United States in this blog sometimes – let’s give it some credit where it’s due. The fact that the US has had such comprehensive and constantly evolving federal legislation in place to protect the rights and freedoms of people with disabilities is a totally awesome for twenty years is awesome. Go America!

Learning about the Americans with Disabilities Act

I didn’t know much about the Americans with Disabilities Actuntil I started writing this blog. For someone who’s involved with disability activism, I still know appalling little about its history. I took a bit of time this morning to go over that history, with the help of this site out of Georgetown Law School: http://www.law.georgetown.edu/archiveada/#ADAAA. Admittedly, it looks like it’s only been maintained until approximately mid-2009, but I got a good picture from it and some places to go for further research.

The Americans With Disabilities Act: The Important Themes Haven’t Changed

I was struck by this sentence on Georgetown’s website: In 1990, after several rounds of negotiations and hearings, Congress enacted the ADA and, in doing so, marked a significant advancement for the civil rights of people with disabilities.

Civil rights. In my reading and writing about disabilities lately, this phrase keeps coming up again and again. And it’s starting to become a divisive one, in that some of the things that people with disabilities are asking for because they consider it a civil rights issue are slamming up against what the people who can provide those things consider civil rights issues. Some of the ones that I’ve covered in this blog are:

The right for people in wheelchairs to access a taxi in the same manner that people without wheelchairs do.

The right for women with intellectual disabilities to make decisions about their bodies (the Ashley Treatment)

The right for people with physical disabilities who use wheelchairs to have full access to public and hotel pools. (I haven’t talked about this in the blog yet, but look for it soon. I just wrote an article about it, and it’sa very hotly debated accessibility issue right now.)

I’ve always liked to consider myself a fairly intelligent person who can look at an argument from both sides. But, even as a person who’d worked with people with intellectual disabilities for a while before my stoke, I didn’t understand how frustrating it was to navigate society as someone in a wheelchair until I was forced to do it.

I wouldn’t have connected a New Yorker in a wheelchair’s experience of missing a movie with friends because the cab he called through the Access-A-Cab service never came, knowing that his friends got there in plenty of time because they hailed a cab from the street in front of the restaurant they met at, as something that would have been totally unacceptable if it had happened to someone in any other minority group in the city.

I wouldn’t have thought about how it would have felt for a child that used a wheelchair not to be able to use a city pool in the summer, until the Americans with Disabilities Act started to mandate that cities find ways to give people with disabilities access to their pools.

I think that sometimes people rail against making these changes to make society accessible because they’ve never had to think about how they’d feel if they or a loved one were in the situation where a lack of accessibility and their civil rights were being violated being violated.

Which is why legislation like the Americans with Disabilities Act is so important.

Before Ontario’s provincial election last year, I posted about how I’d gladly support any candidate for Premier that would extend the the point at which children “age-out” of child protection services (Children’s Aid Society, or CAS, in Ontario) from 16 to 18. I had some conversations this weekend that reminded me about why I think that’s so important, so I’m blogging about it again.

In Ontario, unless a child in the CAS system is a crown ward when they turn 16, and therefore applies for a program called Extended Maintenance, they get pushed into a society that’s void of protection services. Yes, they still apply for social services within the children’s system. But if they’ve ended up back in a house with abusive parents, or in another abusive situation, they don’t qualify for child protection services anymore. Teens with disabilities don’t qualify with adult protective services yet. They are in a no-man’s-land until age 18. For a teen with disabilities, in an abusive situation…that’s a hell of a long time.

Options, Options…Options?

Any teen can legally move out at age 16, yes. But the teens who don’t have a place to go have a real problem. Education law in Ontario now stipulates that they need to be in school until they’re 18. They must also be in school, and have someone trustworthy willing to act as trustee, before they can receive social assistance.

It’s difficult to find these kids a place to go. They learn to survive however they can, either in the abusive home or as “couchsurfers” in other peoples’ homes. I’m surprised by the number that actually manage that way.

I couldn’t have made it on my own at 16.

Child Protection Services and Teens with Disabilities

If a teen faces the added challenge of living with one or more disabilities on top of having no place to go, that infinitely complicates matters. Entire teams of people representing multiple agencies can have difficulty finding a safe, appropriate place for the teen to go. I know – I’ve been on these teams.

Realizing that in that two years between 16 and 18, when child protection services in Ontario stop and adult protective services kick in, it’s like moving a mountain to get a teen with disabilities in an abusive situation to a safe space has been…a source of disillusionment with working in social services.

Hence the Call to Action!

There’s no reason why every child in Canada can’t be assured of child protection services until age 18. In Quebec, Manitoba, and Alberta, child protection services already go to age 18. In the Yukon and British Columbia, they go to 19. So here’s what I want you to do.

If you live in Newfoundland/Labrador, Prince Edward Island, Nova Scotia, New Brunswick, Ontario or Saskatchewan, write a letter to your Member of Provincial Parliament. Tell him/her that children in your province need to be protected from abuse until age 18. Hell, I’ll write and post a letter that people can send or email to their MPPs. Leave a comment or contact me if this is something that interests you.

People in the US…research when people “age-out” of child protective services in your state and see if there’s a gap before teens with disabilities can access adult protective services. I’d be happy to write a letter for you, too.

Yeah, I feel strongly about this. These are our kids. They deserve as much safety and stability in childhood as we’re capable of giving them. They deserve a chance.

Because You Know That I Couldn’t Stay Quiet On This One

Oh goody, another comedian to avoid. For those that haven’t heard, Daniel Tosh is in the media spotlight this week over a controversy involving rape jokes in his recent appearance at the Laugh Factory in Los Angeles. Tumblr blogger “cookies for breakfast” posted an account of a woman who was at Daniel Tosh’s show:

“So Tosh then starts making some very generalizing, declarative statements about rape jokes always being funny, how can a rape joke not be funny, rape is hilarious, etc. I don’t know why he was so repetitive about it but I felt provoked because I, for one, DON’T find them funny and never have. So I didnt appreciate Daniel Tosh (or anyone!) telling me I should find them funny. So I yelled out, “Actually, rape jokes are never funny!”

I did it because, even though being “disruptive” is against my nature, I felt that sitting there and saying nothing, or leaving quietly, would have been against my values as a person and as a woman. I don’t sit there while someone tells me how I should feel about something as profound and damaging as rape.

After I called out to him, Tosh paused for a moment. Then, he says, ‘Wouldn’t it be funny if that girl got raped by like, 5 guys right now? Like right now? What if a bunch of guys just raped her…'”

The club owner says that it went down differently than the woman claims http://www.boston.com/ae/tv/blog/2012/07/daniel_tosh_apo.html, and Daniel Tosh claims “context misquotes” in his tweeted apology. But the incident has ignited an intense debate between two powerful groups: those who believe that comedy can be about anything, and those that jokes like the ones that Daniel Tosh told have no place in comedy.

Damn Daniel Tosh for Complicating My Life

I had no idea who Daniel Tosh was until the day before yesterday. I’d never heard his comedy. I saw link about this story and was pretty disgusted when I read it, and I’ve tried several times to get my thoughts together on the issue and get them down here. Because this has disturbed me as a feminist, as a woman with disabilities, as someone who’s worked with women with disabilities…not to mention as someone who knows many women who have been raped, and as an aunt to a beautiful niece who will be celebrating her first birthday in just over a month.

Debates of this nature come up every time comedians use a slur like “retard” in a routine. I thought I knew how I felt – that if comedians are willing to make one vulnerable group a target, then they should have the integrity to be willing to make any vulnerable group a target, and I can always walk away if I don’t like it (which I do. I don’t like comedy that makes targets of people).

This seems different somehow, though, and I haven’t quite worked out why yet. I do know that with the sexual assault rates for women in general, and women with disabilities in particular, so high (and the rates for men likely higher than they are because of under-reporting), I’m very uncomfortable with any comedian inciting group rape as part of his routine. I feel very off-balance; this really threw my beliefs about the “shoulds” and “shouldn’ts” of comedy, and my ideas of from what I’m prepared to just walk away with a “Oh well, I don’t have to listen to it. Just be fair, if you’re going to be mean.”

I still need to do some more thinking. But I really, really like this woman’s perspective:

In my last job, I worked hard with the people I supported to help them realize that they had disabilities and to realize what that meant in their lives. I did this for two reasons:

The agency’s terminology of choice was “intellectual disability”, in consultation with self-advocates.

“Disability” is so widely used that people really do need to know what it means for them. They need to be able to say, “I have a disability and because of it I need…” and they need to understand “disability” in order to understand and makes decisions about applying for supports that may be available to them.

I didn’t realize until recently though, that I just don’t like that word “disability” anymore. I’ll probably still use it, just because it’s such a socially recognized word, and I’m not sure yet what word I’d use to replace it. But I’ve really started to think about it.

Musings on “Disability”

My arm and leg may work a bit differently than everyone else’s, but they’re still “abled”. Some of the people I’ve worked with have been plenty more “able” in some areas than I have , even before the stroke – better dancers, better bowlers, even better cooks. And even though I’m a mediocre dancer, a terrible bowler and can barely cook a thing, I’m not “dis-abled”. In many areas I’m very “abled”.

But what do we replace “disability” with? I was struck by “diffability” when I first heard it, but rejected it for the same reasons that I have “differently abled”: It sounds like we’re trying too hard to put a positive spin in the wrong direction on disability. “Disability” could use some positivity associated with it, but it doesn’t need a spin implying that people with disabilities are different than everyone else.

Besides, everyone is “differently abled” when compared with the people around them. My sister had trouble writing essays in high school, when that was something that came very easily to me. I struggled with math, when that came easily to her. The fact that we’re all differently abled and have opportunities to use our strengths to contribute to society is a good thing, but that aspect of “differently abled” doesn’t come out in the way it’s used now.

“Disability” – What We Need

We need a word that:

Conveys the importance of focussing on commonalities, not differences

Stresses focussing on what people can do, rather than what they can’t do

Uses positive phrasing.

Socially, it should also be a word that we’re prepared to make obsolete. Because if there’s anything I’ve learned about working with people with disabilities for so long, and living with disabilities myself, it’s that the things that *really* disable people and keep them from living “normal” lives are external to them. The barriers that create “disability” are out there in society, and society needs to become prepared to tear those barriers down:

Make buildings/websites/transportation/processes more accessible.

Design supports so that people with disabilities had a better shot at employment, education, income support and appropriate housing.

Make our communities places in which everyone can participate fully and safely.

Open peoples’ minds and hearts and find ways to change attitudes that disable people.

Let’s make the dream to eliminate “disability” and any other words for it completely, so that we all just become people with different strengths and needs trying to live together. Because, really…isn’t that what we are already?

—

On a totally unrelated note, I’m now writing articles about one-handed living over at Zujava. Check out the first in the series:

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About The Author

Sarah Levis is a freelance writer, disability advocate, and owner/head writer at Running Steps. She has 20 years of experience in the disabilities field and far too many strong opinions, but isn't nearly as scary as you've heard.